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Autism in Black and.... Pink

Confessions of a Believer

Burn_candle_at_both_endsNote: This is a fabulous best of from our Cathy Jameson. Fall fell last weekend here in New England, when we turned back the clocks to early, dark afternoons. Thankfully, Cathy always provides light. From September, 2009.

By Cathy Jameson

With the season of fall right around the corner, I feel a sense of ominous cleansing. Shadows grow longer as the sun sets earlier. Crispy mornings greet me as I struggle to feel wide awake under my snuggly covers.  My older children begin a new academic year of learning and exploring while my son Ronan, who has a laundry list of special needs, makes tiny steps toward some progress.  Unfortunately, my positive outlook grows dimmer as the outside shadows begin to cast darkness through my living room windows. Why do I work so hard for the dream of bringing Ronan back to typical anything when the world immediately outside my front door gives little support toward his recovery? 

The very in-your-face swine flu “pandemic” is all over the mainstream media. It’s even made its way onto children’s television shows.  It’s across the nation and world with political leaders stepping up to the patriotic plate telling us apparent feeble-minded citizens to get this new vaccine to protect our country from the H1N1 flu.  How can one who has learned first-hand about negative reactions to vaccines feel anything but herded into an agenda that truthfully does not protect everyone?  The financial and political push with regard to the swine flu, the regular flu and that incredibly long list of childhood vaccines make me beg to differ when it comes to the current vaccine program.  When the many children who have been ill-fitted with vaccines and have succumb to adverse reactions (i.e., neurological delay, communication delay, gastroenterological problems) can receive the medical, educational, financial and emotional support they and their families needs, maybe I will be more open-minded to what the vaccine camps say.


Ronan has and will continue to undergo medical testing for all of his issues. Between his vaccine reaction, mitochondrial disease and other medical mysteries, we’re tracking behaviors, seizures, gastrointestinal maladies coupled with those neurological delays and more.  He’s a fireball of energy one day with clear communication through sign language but a jumbled mess another day with frustration sprinkled with jags of despair, my despair. 

How do I stay hopeful? How do I keep that cup half full when I hear about other children’s recovery stories that blow me out of the water?  They used to be exactly like Ronan: they had no speech, they had no potty training ability, they used to have screaming fits or self-injurious bouts.  They used be at the bottom of the IQ scale. Now, when reading about those recovered children, I discover a new child: one that had wonderful intervention and parents who work incredibly hard.  That child left the world of the autism spectrum and is functioning in a mainstreamed classroom with limited or no support either biomedically or educationally!  I think it’s fantastic but the longer I’m working with my own son, the farther away I feel from any finish line.

I’m burning the candle at both ends lately. I have forgotten what it’s like to be done with chores and work at the end of each day. Most nights, well, okay, every night, I’m taking one more look at a medical article or reading about behavior intervention. I’m scanning journals or educational books hoping that maybe I missed one piece of information that may actually unlock what is keeping me from typical interaction with my son.  I actually tried to remember a time when I could walk away from the kitchen, with the kids tucked in, with an entire evening with nothing to do but relax. I used to sit on the couch and watch a comedy or even a feature-length film. These days I could care less about blockbuster hits that would have me howling at punch lines.  I have a hard time even slowing down to fold laundry. I have to read and ask and research and wonder and hope and doubt and pray and believe.  I just want my kid back!

As fall starts, the end-of-the-season clearance sales are all but gone.  The premier episodes of many new TV shows are being aired. Carefree summer days have vanished and we’re being forced to prepare for a wicked Flu season according to all the adverts in every bit of media.  I’m going through my cycle of woe is me and why my child as I still have no time to make myself sit and relax.  Why do that when I continue to observe that Ronan still has no clear speech. He still needs assistance to dress and feed himself. He still tries to sneak into the kitchen to find the fruit bowl with tasty pears or apples.  He still needs behavioral and academic intervention before we enter the realm of recovery.

I sit here wanting and waiting and working and wondering when is it going to be Ronan’s turn to recover.  I want so badly for this part of his life to be easier.  I wait for him to patiently figure out how to play a simple game with me while he struggles with fine motor planning.  I work ten times harder knowing that Ronan is working one hundred times harder than me just to live.  I wonder if I will ever accept that maybe, just maybe Ronan’s typical is the most typical he’ll ever be. 

There are breakthrough days that give me that extra push like when Ronan pointed to an owie and used his sign language to say ‘hurt.’  Getting glowing reports from private therapists who truly enjoy and love their jobs give me an extra skip in my step.  Ronan surprises me by being extra cuddly after a peaceful night’s rest letting me know that I can’t let the outside world get me down.  I have to keep trudging and working even harder because I do believe some good and some relief will come for the both of us. 

If it isn’t meant to be for Ronan to be what I envision as recovered, hopefully someone else’s child can so that I can be inspired again.  I may get down in the dumps and wish this all to never have happened.  I can only hope that another family will be positively affected by Ronan’s story and what little strength I can offer.  For now, I continue to pray and to believe that all the kids that haven’t recovered fully, or all the parents that haven’t given up completely, will one day be rewarded and reminded that our children’s lives made us stronger, firmer in our faith and more outspoken in regard to how our children are treated. 

Supposedly we’re gearing up for a nasty flu-filled season. TV shows will most likely talk about it at some point while a Hollywood starlet slaps her name all over a campaign telling us we should all just shoot ourselves up with some vaccine.  Hopefully I’ll be reading a wonderful story about a family who made it out of vaccine-induced autism instead.  I need some stellar stories to get me motivated again because I’m trying to save my son and his world. 
--
Cathy Jameson is mom to five.  She is tired.  She enjoys reading but not the intensity of the material necessary to understand and be pro-active about her son’s issues.  In her spare time, Cathy enjoys writing and networking with other families who have children like her son. 

 

Comments

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Aimee Doyle

I wonder what the full recovery rate from autism is...maybe under 10%? I've never personally known a kid who has recovered, although I've read about it.

My son is 28 years old now - diagnosed when he was four years old. We have spent hundreds of thousands of dollars - tried everything treatment from the conventional, to the alternative, to the downright fringe. He has made progress, and we haven't given up.

One thing that is sort of heartbreaking is that some families will do every possible intervention and get little to no results. Some like us, will get some results. And other families, who do little in the way of intervention, get kids who make lots of progress. And some families put out lots of money and effort and get recovery (or, cure, as I like to call it). There's not a direct cause-effect relationship between effort and results. Seems unfair, but it is what it is.

I still dream of a cure for adults with autism (those who want a cure) - if I can't have a cure, I dream of effective treatments and therapies (although the adult focus is supports and services) so adolescents and adults can make meaningful progress. Seems if we had better treatments, we'd need fewer supports and services.

@Cathy - all the best to Ronan. Belief matters.

4Bobby

Excellent post.

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